On Sunday, over 6 inches of rain fell in Memphis. Luckily in our area there was no flooding, but other areas were not so fortunate.
Monday, the repairman came to look at the fridge. He thinks the fan is blown, and asked me to listen for it to cut on during the day. The temperature reached 96, but no sound from the fan. I called him back and he will return on Wednesday to see if he can fix it.
He is an interesting character. He is very knowledgeable about RVs. But I get a sense that he doesn’t suffer fools lightly. I witnessed him on the phone with a client, and I think he would have cussed had the girls not been present. And I am really sure that he had some choice comments about me when he left, although to my face he was “happy to help.”
Tuesday morning, Jesse was up bright and early. She is so excited to get her port. I had this sense that it would not happen today. And when they reacted surprised to see us in clinic, I was further convenienced Jesse was not getting the port today. But, hey, we were ready if they did do it.
I tried to see Jesse’s schedule online, but it kept throwing me errors. The nurse came in to draw Jesse labs. She told me the stool and urine sample we had turned in last Thursday have returned negative. If (really big and huge if) the stool and urine same returns as negative from this Thursdays sample, Jesse might get out of isolation.
The anesthesia nurse came to see us next about the procedure on Thursday. It turns out Jesse will get her port that day at 12pm CDT. After she left, we saw the nurse practitioner for surgery. She explained how they would put the port in. She also ordered an ultrasound of Jesse’s jugular veins and sub-clavicle veins to make sure they could be used. The ultrasound was for 1pm.
Since we didn’t need to see anyone else until 1pm, Chris, Jesse, and I headed out of St Jude’s. I was sitting in the truck in the parking lot trying to decide if I was going to return to Horn Lake or finding something in Memphis to do. As I put the truck in drive my phone rang. Ultrasound was calling to see if we were still there because they could scan her then.
We returned to isolation. This is where isolation is a huge pain in the butt…we called D clinic. The person who answered the phone said she would notify the clinician. Ten minutes passed… I’ll admit I was starting to freak a tad. The isolation nurse walked through the door a few seconds later. She was surprised to see us. I explained what was going on.
She walked us down to ultrasound… Jesse and Chris actually ran us the entire way, laughing as they ran. The ultrasound showed her veins are looking great. The plan is currently to try and use the same spot for her port.
In 10 minutes, the ultrasound was done, and we were out the door. I took the girls back to the camper because I needed some of Jesse’s medicines.
Since finding out the surgery is not until Thursday, Jesse has been eating everything in sight. Before returning to St Jude for radiation, I took the girls to Chick-fil-a. I figured it would take them 30 minutes to get the food and eat lunch. No they are really fast and efficient. And Jesse was shoving the food in her mouth. I had to remind her several times to slow down because we weren’t going to a fire.
We arrived back at St Jude at 1:50pm. This was way to early for radiation, and going into isolation would have sent them into a tailspin freakout because of not knowing what to do with us.
The girls and I set in the shade for about 10 minutes before demanding Jesse started pitching fits. I can’t wait for this kid to be a teenager. I am going to find ways to aggravate me all in the name of “you had it coming.”
When we went into the isolation holding area at 2:10, there was no one there. About 2:15pm, a group of doctors or nurses came out into the inner holding area, but they didn’t open the doors to let us in.
I called the Radiation Oncology Clinic. I explained that while our appointment was not until 2:30pm, we were here early because of trying to get through isolation to the clinic. The radiation oncology nurse said she was coming to get us, and about 7 minutes later she appeared with a wheelchair for the girls to ride in.
The radiation child life specialist met us at the door. They were not ready for Jesse yet on the radiation table.
While we were waiting, the Ethel study nurse came by with a certificate for Jesse. I told her about the CVL being removed. Turns out the two people who can examine the CVL for bio-film are too busy right now to look at Jesse’s. So they are going to basically just trash it. They will keep her results from the study when she was getting the ethanol/ placebo. They just won’t look at her line.
I am a little bummed about this. Another reason that I asked for the port was to make sure that the Ethel study doctors received Jesse’s CVL. If we had the surgery at CHKD, I would have had to chase people to make sure it was mailed back.
Finally at 3:05pm, they came for her. Jesse happily walked on back with them. This time took 45 minutes because they needed the doctor to complete the final setup for her. Now it should only be 20 minutes.
Chris and I waited in the room because I don’t want to be an issue. I don’t want to talk back with Jesse and her think that she can flip out. I also bribed her with Starbucks. If she laid still on the table for 20 minutes, then she could get iced coffee.
At 3:50pm, Jesse returned. She made it!! She was so excited about getting coffee. The child life specialist told her that not many 5 year olds could hold still as she has done.
I also pointed out to Jesse that once her port heals in 7 to 10 days, we can go swimming when she finishes her radiation. I also asked her how she felt. She said great. I then asked her how she felt after having propofol the other day. She said tired. I am hoping this realization that propofol doesn’t really make you sleep sinks in.
The girls were excited to return to the camper and play with the Barbie Doll. Thank you Jimmy and Nancy for the doll and clothes. They have really enjoyed dressing and undressing their dolls.
Thank you for the card, Mt Pleasant Baptist Church Tuesday Morning Bible Study.
Today the repairman is returning to change the fan on the fridge. I’ll be glad to have that fixed. 🙂 Jesse has radiation at 2pm. Then tomorrow is the big day because of radiation, surgery, and collecting another stool and urine sample. It would be so awesome if for the last two weeks we are at St Jude, we aren’t in isolation. Yesterday they had a huge viewing party for the USA soccer match. Could Jesse participate? Nope.